My name is Ashley Van Horn and my CHD's are coarctation of the aorta and bicuspid aortic valve.
I was born January 14th 1987. All surgeries took place at Helen Devi's Children's Hospital and the Fred and Lena Meijer Heart Center in Grand Rapids, MI.
I had my first, and only, open heart surgery at age 13. My heart was functioning at 10-12% they said. The symptoms I presented, nobody would've ever guessed that it was a heart issue. I wish I had known what CHD was back then. I didn't find out until many years later what it meant and what it was.
When I got diagnosed were serve fatigue, nausea, and vomiting, they took me to the ER they said change her diet but then the radiologist re-read my xray and called my doctor and said, "she needs to get to children's immediately." That’s when they found half inch on each side of my ribs because my heart was so swollen because of all the fluid, it was overworking itself. They drained 6.5 fluid off me I was within 4 hours of a massive heart attack.
After my open heart surgery, I felt better for a long time, until 2006, I was diagnosed with tachycardia and my heart beat was 230 bpm during an echo. So they did an ablation through my groin. I felt great for a year and a half, then it came back. They said it could take 9-10 ablation surgeries to make it work for good. Since I was so young they put me on medicine to make it better to avoid repeated surgeries.
The tachycardia resolved itself I think. No more tachycardia meds because of the baby. So far during the pregnancy no tachycardia or issues. I do like my doctor. He is very thorough. I just wish he'd leave the negativity out sometimes.
For the last few years, my energy has declined. I have been battling left ventricular dysfunction. It leaves me with severe fatigue. I am on medicine to try and increase my ejection fraction. It's improved a little but I hope some day it will disappear. I currently take baby aspirin and toporol.
I do my best to eat right and always try to make sure I keep moving. Sometimes the fatigue stands in the way. I work home care so I'm always moving. I work as a CNA taking care of elderly in their homes. My stamina has decreased along with my ambition.
My hobbies are traveling...this world is huge! I also love being with friends. The few things that make me truly happy in life is spending time with my husband and my dogs. Also, spending as much time with family as I can! My favorite place to travel to is Dollywood in Pigeon Forge, Tennessee!
Traveling is hard depending how far I'm going. Flying does affect my circulation but one time in particular I had to take a bus back home. The bus ride was for 2.5 days and after sitting that long, by the time I got home, my ankles were the size of softballs. I had to go straight to the hospital. Thankfully there were no clots!
CHD is definitely affected by the weather for me. Winter and summer time affects me the worst. I get really short of breath in the winter, and dizzy and overheated in the summer. Therefore, in the summer time, I can't walk as far. Spring is the best season for me because it's easier on me!
I am the oldest of four girls and am the only one with a CHD and all siblings are heart healthy. Mental illness runs in my family. My mom suffers from a chemical imbalance. I don't handle stress well. And I get very nervous easily.
I was just married in September, and now a dream of mine I was told would never happen, has.
I am currently expecting my first child. I am 12 weeks along and there's been a set back as far as not being sure if I can go all the way because of the aneurysm they found in my aorta. It went from moderate to severely dilated, so now I'm at risk . The aneurysm was found when I went to my 8 week ultrasound. I hadn’t had an echo in a year so it happened sometime in the past year.
They say in women if it grows to 5 cm or bigger it can rupture at any time. So right now I'm on extra watch. With the baby I'm on high risk and we’ll try to get to 20-24 weeks, then they may take the baby.
Then the next step is to talk to the surgical team… they will have to replace the entire aortic valve.
With CHD surgeries, we all often have to wait until we’re sick enough to have surgery, yet healthy enough to survive, so it’s hard.
They have certain standards to follow and they have to wait until I'm at risk enough to do surgery. Multiple places told me no they wont touch me because they're not 100% sure they need it done yet. The thing that makes it difficult too, is they had to cut part of my aorta out during my surgery for COA, so when I need it repaired, it's more complicated because it’s a millimeter away from where the last surgery was, which is all scar tissue. For now though, once a month I get checkups.
Any advice I'd give is it's not the end of the world.
You can get through anything.
It's a hard journey but it the end, it's all about the fight in us!
"In the hour of adversity, be not without hope". To me it means no matter what life throws at you, nothing is impossible to overcome!
Don't ever give up!
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